Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Honestly.

It’s raining. It’s been gray for oh, I don’t know, the last five days or seven hundred years or anyway, I’ve had enough. Yeah, sure, like all my friends growing up in the desert Southwest I said, in high school, “WHEN I CAN I’M MOVING TO SEATTLE WHERE IT RAINS EVERY GODDAMNED DAY BECAUSE.” Then, I got to move to upstate New York and one day my mother in law called me and said, “You might have Seasonal Affective Disorder, get some plant lights.” I had NO IDEA how much I needed the sun and how depressing a dark house is or how wrong it was to plant those plant-light nurtured gardenias in the front bed as we left military housing. I bet they were dead before we even got off post. I’m sorry, gardenias, please let the sun come back.

But this grayness, it is too much. As I sat through a three and a half hour meeting today in an entirely glass room (the curtains were mostly closed) where I could see all that gorgeous weather, I could appreciate it, yet still I wanted to crawl under the table with my blankie and take a nap. Instead my coworker and I texted each other about how awful the meeting was, how awesome my new purse is, and I doodled a billion odd women and a few men on the agenda. I mostly stuck to my resolution to observe and find humor, so when my other coworker The Director made his stand on an issue and began speaking in slogans I giggled quietly to myself, and when Mr. Wonderful who is, like, 14 (I am that age now where everyone seems too young to drive or even tie their shoes yet they seem to have jobs and can prescribe medication) misunderstood the question and gifted us with wise ideas for fundraising that were right up there with “bake sale” I tittered softly. When Ms Amazing (this is not a sarcastic title, unlike Mr. Wonderful, which is TOTALLY sarcastic) filled a plastic coffee mug with leftover sweet potato salad I pointed out that it looked like she’d just puked in her mug at a frat party and she was not particularly happy with my imagery but I found myself pretty damn funny.

The meeting is over, which is awesome, although it is still raining, which is decidedly not awesome. My body does not like the cold at all; my internal thermometer and thermostat are unregulated like the 1929 stock market and I am frequently suddenly FREEZING and my hands go numb and I can’t warm up and then suddenly I am ROASTING my god it’s so hot, etc. This is not optimal for a person who is almost always dressed to the point of wearing a costume and wants to look cool and otherworldly instead of old and vaguely weird. Vaguely; ha ha, VAGUELY is not part of my presentation. WEIRD, on the other hand, plays a strong role.

Tomorrow is the first day of classes and I need to be ready to sling some amazeballs at those hungry college students so that they fear, respect and admire me all at once. This is generally doable, but I swear ta gawd I’m going to need some SUNLIGHT.

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About Guenevere

I am an artist, a stitcher and a costume designer expressing myself through design, costuming, sewing, drawing and teaching. I also have Ehler's Danlos Syndrome, Type 1, and suffer daily chronic pain, degenerative changes to my joints, IBS, POTS and likely MCAS. Life is one big picnic.

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Sunlight is certainly beneficial whether you have SAD or not. I made a big mistake once. I was on a high dose of Prozac for MDD and visiting my boyfriend’s family upstate. She had SAD and all but bullied me into using her light every morning. I’ve since learned to be less of a people-pleaser, because this time it landed me in the ER with Serotonin Syndrome from the combination just overloading my brain. It’s true what they say about all things in moderation. Boy, i never thought 15 mins of UV light would really be that potent!